Tag Archives: schizophrenia

Professor Elyn R. Saks is a woman with an impressive number of awards, titles and accomplishments tied to her. She is a professor of psychology, psychiatry and behavioral health for the University of Southern California Gould School of Law as well as the assistant dean of research there. She is also an adjunct professor for the University of California, San Diego, school of medicine, and a psychoanalyst with the New Center for Psychoanalysis (Saks 2013). She recently was awarded the MacArthur Foundation Fellowship for her creativity and immeasurable contribution to the law especially as it relates to mental health patient rights and ethics. Through all of this she also suffers from schizophrenia, a life-long thought disorder that has left her hospitalized twice in England and once again in the United States. Her passion as an advocate in the field of mental health stems from her own experiences within the system as a patient and again as a lawyer for those who have found themselves a part of the mental health system. As if that wasn’t enough for any one person to balance she is also a cancer survivor. Sak’s story is one of an indomitable will and resilience in the face of multiple setbacks and difficulties. In 2007 she published her memoir, The Center Cannot Hold: My Journey Through Madness, her retelling of her own recovery and her desire to chip away at the social stigma of severe mental illnesses like schizophrenia . Her retelling of her insights even at the worst of her psychosis is something which any mental health professional and lawyer should pause to consider, and her capacity to not only remember what she experienced when her symptoms were at their worst but also to talk to others about those experiences makes her the ideal advocate for mental health patients everywhere in the United States.

Saks has had a variety of experiences as a patient with paranoid schizophrenia and severe depression, some good and some bad. Her first hospitalization occurred while she was in a post-graduate philosophy program at Oxford. She was severely depressed and experiencing many paranoia

and psychosis including what is called ideas of reference and influence, which means she both thought that other beings were inserting thoughts into her head and that she was making things happen like killing people with her thoughts. Her thinking was so disorganized to the point that she could not string together a full, coherent thought. Her sentences, or what passed as a sentence when she was that sick, were full of incomplete sentences and unrelated words with the only accompanied association being rhymes or puns. These symptoms became a hallmark of her later psychosis, becoming more and more difficult to control as well as much more severe and debilitating, a waking nightmare as she has come to describe it (Dvorsky). During her time in England she resorted to such behaviors as burning herself and wandering alone in the tunnels beneath the hospital she was receiving treatment in. An interesting thing about the way the English psychiatric hospital system works is that despite her significant symptoms and self-harming behavior she was never once placed in seclusion or in restraints. The hospital doors were always open and every patient had the right to leave or stay and had a say in their own treatment, including whether they would take medications or not. Her case was not anything special; England had not used restraints or seclusion in their mental health treatment in over 200 years. Saks later compared this quite humane and compassionate treatment theory to what she experienced in the United States and used it as a reference in articles and books that she later published while in law school at Yale and later in her career. Her hospitalizations in the United States included wild swings between two very different systems of treatment: frequent use of restraints, seclusion and forced medications or redirection and encouragement to use coping skills to play out her anger and frustration. However, none of her treatment programs in the United States encouraged her to explore just what it was that she was experiencing in her psychotic state. Actually, they did the exact opposite in that the doctors and nurses were startled and scared of her and her delusions and psychosis and discouraged her from saying out loud what was going on in her head. This in direct contrast to what had been encouraged during her stay in England where she had succeeded in continuing to work on some of her masters level research and

essays even while she was hospitalized. She had felt heard, understood, and supported and therefore her recovery was faster and her time in the English system of treatment for mentally ill individuals was a relatively positive experience for her. She had very little that was positive to say about the American treatment system. It was a lesson and awareness that continues to influence her even now.

Another hard lesson for her was discussing her concerns and observations with psychiatric and law professionals who had a very different view of what was beneficial for psychotic and other mental health patients than what her experience showed her. She discussed the use of mechanical restraints with a professor she greatly respected. She was arguing that regardless of whether someone was psychotic or not the use of restraints is degrading and dehumanizing. Rather than understanding she discovered that he held the same opinion as most every other psychiatric professional in 1980s, “Elyn, you don’t really understand. These people are psychotic. They’re different from me and you. They wouldn’t experience restraints the same way we would” (NPR). Saks, at that time still a student in the Yale law program, was unable to tell her professor that his opinion regarding the difference between a psychotic and non-psychotic individual was wrong, that there was no difference between a psychotic and non-psychotic individual (NPR). She knew then that if she was to tell any of her professors about her own mental illness then her chances of being taken seriously as a lawyer were few. The stigma of mental illness was, and continues to be, so strong that even well educated and sympathetic people viewed themselves as different from anyone with a psychiatric illness. The us and them mentality does not stop at the border of a psychiatric treatment facility either. Within the micro-communities of inpatient hospitals there is an unvoiced hierarchy. People with less obvious illnesses like bulimia or anxiety or even depression considered themselves better, in some ways more human, than those with schizophrenia or other thought type disorders. Even during her own time in several inpatient facilities Saks had much of the same opinions. People who scared her were not the same as her, she was better than them, she didn’t need to be in the same place as them. She was confronted by her own

discrimination when another person in the same inpatient facility told her that he knew he didn’t need to be there any longer because he was nowhere near as sick as she was. He was too sane to be around someone like her.

Saks could have taken that sort of information and just tossed it away. She was still floridly psychotic when she was told this, but she had enough insight to know that she needed to take that sort of thinking into consideration. The next decade or so the mantra of “I don’t belong here because I’m not that sick” was something that stuck with her and which she used over and over to convince her providers that she needed to try getting off medications, that she was okay, that she really wasn’t someone with a mental illness. She was just not as good as everyone else at controlling her reactions and interactions with the very scary things that were going on in her brain. She was convinced that everyone from the other law students to her psychotherapists had the same sort experiences of killing thousands of people with their thoughts and that they were personally killed and tortured many times over by the same demons she fought with. They just knew how to keep quiet about it. Up until the 1990s even when she was on medications that helped with the delusions and paranoia she was experiencing she still had a lot of breakthrough symptoms. She described the experience as always having to fight to keep the door between the scary, intrusive thoughts and her own thoughts and what was going on in the real world. She could always feel or hear the scary things, they were always there at the edge of her consciousness trying to push through and torment her further. She had not really known anything else and so it was not a large leap of logic to think that every other person had the same problem of trying to keep nightmares from taking over their way of thinking. All that changed, her entire perspective changed, when she started on some of the newer antipsychotic medications that were developed in the 1990s. Saks described her experience in an interview she did with NPR in February, 2013, “I think I only really came to terms with having the illness and being careful about how I structured my life, ironically, when I got on really good medication. It made me realize that, you know, these

chaotic and violent thoughts weren’t things that everybody had.” Suddenly she wasn’t always aware of those nightmares knocking on some internal door in her mind. Her thinking was much more clear, she was less tired and much relieved that she didn’t have to fight to hold that door closed every moment she was awake.

Once Saks stopped fighting her illness she found that she was not as confined by it as she had been every day that she had struggled against it. Rather than being Elyn Saks, the lady who was always in fear of being the crazy bag lady muttering and yelling at buildings, she discovered she was able to be Professor Elyn Saks, a successful lawyer, teacher and good friend who happened to occasionally need to take some space for herself. Once she no longer wasted so much energy fighting to keep her thoughts straight or worrying over whether anyone else could see that she was struggling so much she was able to do more for herself. She began a program to become a psychoanalyst. She started dating again and married a very supportive man. She established herself as an expert in the law as it applies and relates to psychiatric cases through the research and publication of many books and reports focusing on the complicated ethics that often surround them. With colleagues at the University of California, San Diego she has started a research program to find other high functioning individuals with schizophrenia. With the release of her memoir and her even more recent TED talk she has joined the dozens of other individuals who advocate for recognizing and challenging the stigma related to mental illness. She has become so well known for her advocacy that celebrities like Glenn Close gave her a shirt that says “Schizophrenia” after asking her to be on the board of her nonprofit organization Bring Change 2 Mind (NPR Day). She has demonstrated that a diagnosis like schizophrenia is not a sentence to a life of little fulfillment or joy but is rather something that an individual can learn to work with and around to lead a completely productive life full of accomplishments and community service. Saks’s continued contribution to both the field of psychiatry and psychiatric law is one that completely contradicts the “grave” prognosis her psychiatrists gave her many years ago. Saks has been exceptionally successful in

her life in spite of her mental illness. “There are not schizophrenics. There are people with schizophrenia and these people may be your spouse, they may be your child, they may be your neighbor, they may be your friend, they may be your coworker” (Saks 2012).